Here in the UAE it is hard to find the right meds to help you deal with the different things that Fibromyalgia brings, and the meds you do find here, are most likely not covered by insurance.  Let’s be real, even in most countries it is hard to find the meds you need, because we have no real clue to what Fibromyalgia is.  What the doctors do know is that there are some meds that do help some people.  What are those meds, well they are like Lyrica, Cymbalta, Savella that has been approved as a Fibromyaglia drugs. Lyrica, was first approved as an anti-seizure medication, before it was the first medication approved to treat Fibromyaglia. Most likely this medication is covered here in the UAE under your insurance. Cymbalta, was the next drug approved for Fibromyaglia and it listed as an anti-depression medication and will most likely will not be covered by your insurance.  Savella, has only been approved in the US, and is not available here in the UAE. I must add that all of these drugs are approved in the US as Fibromyaglia medication to help with the pain of Fibromyaglia, and not here as such.

There are other medication used to treat the affects of Fibromyaglia, but are not listed as medication to treat Fibromyaglia.  They may include, Tramadol, amitriptyline, and other anti-depression drugs and pain meds.  It isn’t the case that anti-depression meds, are given for anti-depression, but to help control the pain and sleep with Fibromyaglia. Some patients with Fibro can and/or might get depress, but that is not always the case.

One of the big problems that I see is that everyone with Fibromyaglia is different, what might work for you, may not work for me.  You may have to try different drugs for treatment and also other non-drug treatments, to find your right answer. As I know of, there is no medication to help with sleep here in the UAE.  Most patients with Fibromyaglia have a hard time getting that deep sleep that they need to help their bodies repair themselves.  If we can control our sleep, I think many of my problems would be reduced.  It is so much harder to deal with the pain, when you have not had that good deep sleep.

It you have tried anything that works for you, medication or other treatments?

No related posts.

Related posts brought to you by Yet Another Related Posts Plugin.

On March the 12th the Emirates Arthritis Foundation will be hosting the 3rd Annual 5K Walkathon at Dubai Festival City. All the proceeds will go to the Emirates Arthritis Treatment fund.  With your support we can help make a difference in people’s life through education, awareness, and supporting patients in the UAE with their expensive medication (as much as 70,000AED per year/ per patient).

The Foundation needs help in many ways, they need help in getting the word out about the event, they need runners/walkers, they need volunteers to help on the day of the event, and craft people to sell items at the craft fair taking place at Dubai Festival City. If you are a company that can help with t-shirts, water for the runner/walkers, or anything that you can think of that will help make the day special, please do.

Runners/Walkers the foundation needs you to help to get people to sponsor you for the walk. The target for this year is for each runner/walker to collect 5,000AED.  If you can collect donations of 5,000AED or more you will receive a 100AED Mall voucher. Please download the collection sheet and get busy collecting.

Arthritis affects 1 in 5 people worldwide. The average age of Arthritis sufferer is 43 years old.  It is not just about old people but young people including children, suffer can suffer from this debilitating disease.  Not only affecting the joints, but skin, eyes, lungs and hearts.

We lost 2 children to Arthritis last year.  We hope in 2010 we can make a difference through education, awareness and supporting patients in the UAE with their expensive medication (as much as 70,000 AED per year/per patient).

We can only do this though with your support. Therefore we would like to set a target of 5000 AED per participant.  Please ask your friends, families and colleagues to help a fantastic cause.

All sponsorship forms and funds need to be submitted by the 18^th March 2010, for press purposes.

If you would like to know more about the foundation please see our website www.arthritis.ae or call +971 42317470.

Thank you for your support in advance.

Emirates Arthritis Foundation

Please print out the Sponsorship Form and start helping Emirates Arthritis Foundation

GET BEHINDS SPONSOR FORM

No related posts.

Related posts brought to you by Yet Another Related Posts Plugin.

Has the Whittemore Peterson Institute found the answers to Fibromyalgia and/or Chronic Fatigue Syndrome? Well in a small study they say that they found a retrovirus in most people with Chronic Fatigue Syndrome, Fibromyalgia, and Multiple Sclerosis.

We have detected the retroviral infection XMRV is greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested. The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections. (See XMRV paper in Science.)

This discovery opens an entire new avenue of Neuro-Immune Disease related research and our discovery has brought to this field world-renown immunologists and retrovirologists building our team of collaborators to translate our discoveries into new treatments as soon as possible.

I hope, as I know we all do, that they might be able to finally find some of the answers that we are all looking for.

No related posts.

Related posts brought to you by Yet Another Related Posts Plugin.

Well it has been a while since I last wrote, but it has been an interesting time.  It seems that my iron levels are also affected with Fibromyalgia, and they got really low in November and December.  My iron and Ferritin (a protein that stores and releases iron in the body) levels were so low that I was having a really hard time being able to go through the day with out sleeping, having bad joint pain, and freezing.  When I would get home from work, I would just go strait to bed, and I would sleep until the last minute before having to go back to work.  This was not how life was to be, even with Fibromyalgia.

After talking with my doctors, it was decided that I would take a course of iron IV treatments.  The thing is that even with the iron treatments, I would not see any increase of energy or iron levels for about four weeks.  I have since had three treatments, and I am now just really seeing the benefits of the treatments.  It has been a long road, and I hope with the help of the doctors, we can now watch my iron and ferritin levels, before they get too low again.  This is just on more thing to watch out for, on top of my B12, Vitamin D, and Thyroid levels.

So, this is just latest to the long list of problems with Fibromyalgia, and I am sure there will be more, that we will have to watch out for.  One thing you can count on with Fibromyalgia, is that there is always something new down the road.  My hope is one day they will find some answers to Fibromyalgia, and in turn find us some help.

No related posts.

Related posts brought to you by Yet Another Related Posts Plugin.

The time that I have been back from my treatment in the US, has been long and hard time. My lower back has been giving me a hard time, and it wasn’t until the last week or so that it has been better. I even went to the ER because I could not take the pain any longer. My lower back has always been painful, but this time it was different, my legs didn’t really want to work either. I also had a really hard time with the new med they gave me Sevella. This is a new drug that was approve in March for Fibro, and the pain that comes along with Fibro. It was hard for me to connect words together to make sentences, and I could not really think strait. After about three weeks, I stopped taking the Sevella, and I improved a lot in a short time.

I do believe that taking the thyroid med is helping a lot, and I went almost two weeks, with out the real (not able to get out of bed) pain. It has been a really long time, since I have felt this well. Though last Thursday, I had my first really bad day (I should have listen to my body and went home), I am still not ready to complain.

Last Thursday I also had my first follow-up appointment over the phone since leaving Atlanta, and it was nice to find out that I have some more problems, that we need to look at. Most of things the doctor told me over the phone was not a surprise, and he had even told me, that he expected that I had these issues. I should receive his new orders soon, and I can update you on what else I am having to do.

I have been reading a book recommend by the center on yeast, The Yeast Connection Handbook, by William G. Crook. So I am learning all the issues with yeast and the overgrowth, and what that can do to your body. The hardest part is learning to leave out the yeast, sugar, other items that can feed the yeast, more on that later.

No related posts.

Related posts brought to you by Yet Another Related Posts Plugin.

The treatment in the US was long but short, on the first day, they took what seemed to be all my blood in my body, but that wasn’t too bad. I then saw the doctor, and he explained what they think was going on, what they would find from the test. After about an hour, I was sent to a room for some IV treatments. I had no problem with the IVs and even thought it seemed like forever for them to finished, I was on my way back to the hotel by 3pm. The worst part of the first day was that I had surgery on my mouth, before leaving Dubai, and I developed something called dry clot. It was pass painful, and thank goodness the center found me a very nice dentist.

On day two it was more of the same with IV treatments and me learning how to give myself a shot (which I totally hate). I was so tried that I sleep for most of the day, that was after Magnus found me earplugs and one of the nurses gave me an eye mask.

The third day in Atlanta was a free day, so we tried to catch up on some shopping and I really over did it. Magnus, could even tell that I over did it, big time, but the time was short. It rained almost everyday we were there, and most people would have been upset about that, but for us, it was really nice to see and feel the rain.

We returned on the fourth day to get my results and to get more IVs. The results told us a lot of things. I have an over growth of yeast (that isn’t something that I am proud of) I have a big problem with my iron levels, and thyroid levels are also low. It seems that my adrenal glands are not working as they should. The doctor believes that this may come down to me having the Epstein Barr Virus about 10 years ago. So, if you add all of this to my level Vit D3 levels, you can probably understand why body is hurting like it is.

One of the hardest things, was trying to get all of my meds and supplements together, to come back. We were in Atlanta for seven days, and it was a busy seven days. I wish I had more time, and also took it a bit easier, while I was there, I believe that would have made things a lot easier.

I cannot tell if all this money and treatment will all work, but it was nice to be in a place, where they did seem to have some kind of idea of what is going on with me and my Fibro.

No related posts.

Related posts brought to you by Yet Another Related Posts Plugin.

Last night on twitter @nursebc1974 posted a line about Fibro, “No winning with fibro.. just adapting.” LOL I think that is so true, because just when we think we have something figured out, something new comes up. you can follow me on twitter @cnystedt.

I would one day like to figure out how to get off all of the meds and not be in so much pain. This is why next month I am going to the US to get help. I am not sure where this journey will lead me, but I hope for the best and wish for much improvement. The place that I am going is Fibromyalgia & Fatigue Center, and they have some interesting theories on how or why we have Fibro. I had to fill out this 37 pages survey on my problems and they will take a lot of blood samples while I am there. In many ways I wish that I was leaving tomorrow for the treatment, but in other ways I am afraid, what if they can not help me? Then what will I do then??? I do have a lot of hope that they can help me, and I promise to pass along any information that I receive there, that may help you as well.

No related posts.

Related posts brought to you by Yet Another Related Posts Plugin.

It has been a while since I have posted and I am sorry that I have not posted in such a long time. Between work and not sleeping that much, my time for thinking or writing has been short. I love my job (was promoted in January to Managing Director of our company) and it has been a lifesaver and also the thing that may have made my Fibro worst. But with out work, I am not sure where I would be today, because that is what keeps me sine and gets me up each morning. In February I was even in hospital because I needed help with pain management. I think it also had to do with two very long trips to the US in less than three weeks that did not help, but I now have two wonderful Doctors that are trying there best to help me. It seems that I am not that easy, and we are at a lost with what to do next.

One thing I think we have learned is that when my Vit D starts to get low, my pain and problems get much worst. So we are checking my levels every six weeks, and if I need injections, I get them. My muscles feel like they have a death grip on my body, and nothing will loosen them up. For the last month, I have survived by going once or twice a week for massages. The poor therapist has tried so hard to get the muscles to relax, and it is hard work for them, without getting the muscles to relax.

Since my Vit D shot about six weeks ago, the muscles have let go of the death grip (thank goodness) and now it is just regular Fibro pain. I am also very tired that it has been hard to even get out of bed. It is nice to be able to sleep, but I need to work as well . The Vit D check is this week, for the six weeks, and we will see how the levels are then.

No related posts.

Related posts brought to you by Yet Another Related Posts Plugin.

It seems my doctor, Dr. Badsha, conducted a pilot study on the affects of yoga on rheumatoid arthritis patients. This study found that yoga can have important physical and psychological benefits to rheumatoid arthritis, patients. Read the article at the Eye of Dubai.

A pilot study conducted in the UAE reveals 12 sessions of yoga significantly improved the conditions of rheumatoid arthritis (RA) patients. This study was presented before the 13th Congress of the Asia Pacific League of Associations for Rheumatology in Yokohama, Japan by a team of Specialists in the United Arab Emirates.

“It is possible that yoga may have important physical and psychological benefits for patients with rheumatoid arthritis,” declared Dr. Badsha, specialist rheumatologist, Dubai Bone and Joint Center (DBAJ).

A total of 47 patients were enrolled, of which 26 undertook yoga sessions, while 21 were on regular arthritis treatment. The baseline demographics were similar in both groups. The Raj yoga sessions were conducted by a licensed practitioner with a Master’s qualification in Yoga. Raj yoga is defined as “concerned principally with the cultivation of the mind using meditation to further one’’s acquaintance with reality and finally achieve liberation.”. The yoga was specially modified to suit Arthritis patients by Dr. Vishwas Chhabra and Dr. Badsha, and this new program is being called Vishwas Yoga for Arthritis.

No related posts.

Related posts brought to you by Yet Another Related Posts Plugin.

Okay time for another update of how things are going. After what seems to be about 20 pints of blood we have found that my Vit D levels are way too low, that I might have celiac disease, my calcium levels are low (no surprise as my Vit D levels are low), and then after a few more tests they found out that my PTH is high and my Free Calcium level is High. So what does all this mean, well I am guessing a couple of different things.

First I have cut out all wheat from my diet, and that has been interesting, more about that later. I am making an appointment with a gastroenterologist about my celiac disease and an endocrinologist about maybe having Parathyroid Disease. That doesn’t help my low D levels, but I am guessing that we will get to that, at some points. Oh my test from the OB/GYN came back all okay, so that is one less thing to worry about.

So, how do I feel about all this, I am not sure. It is nice to try to figure out what is going on, but then sometimes it just means more doctors. I am about tired of the doctors, but I know that they are the only way we will ever figure out what is going on.

My doctor says that studies are showing that people with Fibro have low D levels and are having problems with gluten, and that seems to be the case with me. Let’s see what the other doctors have to say, before we know anything really. Will keep you update.

No related posts.

Related posts brought to you by Yet Another Related Posts Plugin.